At the event, I learned some interesting information.  I wanted to share a few highlights from my notes.

• It is a fact that the numbers of children with food allergies continues to increase.  The number of children diagnosed is increasing but yet the medical community hasn’t changed their way of testing for food allergies.  So, we can’t attribute the increase to better testing methods.
• From 1996 there has been a steady increase in diagnosis but more importantly the severity of the food allergy has increased.  This is the alarming.
• Today there are 12 million Americas most children under 18 that have food allergies.
• We spend $6B on medical food allergy care in hospitals but a fraction of money on research
• 38% of children have multiple food allergies so be cautious
• Important to have 2 EpiPen’s and not just one.  The epinephrine only lasts for 20 minutes.  If you can’t find medical attention in 20 minutes be prepared to administer the other EpiPen if the reaction continues.
• The epinephrine in an EpiPen is equivalent to 2 cups of strong coffee.
• 50% of children with food allergies will have an anaphylactic reaction in their life.
• Delay the introduction of foods – milk 6-12 months, eggs 12-24 months, peanuts/tree nuts/seafood 24-48 months

The cost of this research and trials is extremely expensive.   If you are interested in donating money, please visit supportLPCH.org/SAFAR.

I couldn’t have done this alone.  Thanks to staying up late in the night to make that perfect cupcake to the other allergen friendly companies offering tasty treats.  This year, I found another great allergy-free candy company called Gimbal’s.  Gimbal’s offers candy free of the top 8 allergens and gelatin.  These candies are made in a dedicated facility.  Their candies ranges from assorted flavor jelly beans to sours and licorice.   They are sold in retail stores all over the US and online their website.

Here is a list of great allergy-free candy companies we use for those special  treat needs.  I hope you enjoy them as much as we do.

Gimbals

Divvies

Surf Sweets

 Yummy Earth

If you have any other allergy-friendly company, please let me know.

I decided to create an allergy free special treat list for the teacher.  I can’t tell you how rewarding this was to create.  When putting this together, it made me feel happy and realize that he can have so many store-bought special treats just like the other children.  Of course, I knew this but writing it down somehow made me feel better.

Please check out this list below as maybe some of these would work for your family.  Matthew is allergic to the top 8 (except wheat) and beef so all of these goodies fall within our safe food requirements.  If you have any store-bought snacks please share as I’m sure there are more out there.

Allergy Safe Treat List

1) Save the date and join us at the 5K walk on October 13, 2012 at Lake Cunningham Park in San Jose.  Last year our little team of six runners raised $1200.  This year, we are going to aim even higher as these funds support education and advocacy of food allergy safety in our schools and cities.

2) You can painlessly help save a life with a mouse click.   The Whole Foods Market on Blossom Hill in San Jose has  pledged to donate one dollar for each 1500 new “Likes” of it’s Facebook page before Tuesday, March 13th to the San Jose FAAN Walk.  We’ll need to reach 1500 new Likes for the pledge to work, so please take a moment to please Like them now  and share the request to your Facebook friends.  You don’t need to shop at this store – or even live in San Jose – to like the fact that they care about food allergy awareness — and happen to be one of few grocery stores that actively source allergy-free brands of food and personal care products.

Brian Hom is a driving force behind both the inaugural San Jose FAAN Run/Walk in 2011 and the Facebook campaign with Whole Foods.  His passion for food allergy awareness is personal as he tragically lost his 18 year son to an anaphylactic reaction to peanut.  He advocates for more awareness as he does not want another life to be lost when it could have been saved by more knowledge about the symptoms and treatment of severe food allergies.

At first I thought to return to my previous allergist (last visit circa 1992), who happens to still be practicing, but after doing some online research I realized he’s really not on the cutting edge of allergy medicine research anymore.   He must be close to 70, so I don’t judge that at all.  I am lucky to have other choices (I have health insurance coverage from both my and my husband’s employers), so I figured I could compare and contrast between a PPO and HMO allergy testing experience.  I made appointments at two allergy specialist doctors – and did not tell either one I was seeing someone else “on the side.”

Doctor A: PPO Insurance (private practice)

Number of Doctor Visits: 2
Number of Lab Testing Visits: 1
Tests (5):  Two breathing tests for asthma, Skin Prick: Food Allergens, Skin Prick: Inhalants/Environmental Allergens, RAST for select foods
Cost: ~$1500 as I hadn’t reached my annual deductible

I chose a popular allergy practice in the area — it happened to be the same practice as some of my friends — and made an appointment for the doctor with the most research listed on his profile.   For the first appointment, I was both excited and nervous about getting some answers.   Have I grown out of anything?  Grown into new allergies?  As I child I was asthmatic (exercise and allergy induced), but haven’t had a bad episode for years and years.   I passed the asthma tests with no problem but still got a refill on my inhaler as this may come in handy in an emergency.   Then we moved into the skin prick test for foods.  I got the full work up as I have had some strange reactions to raw green beans and snap peas, it has been so long and I wanted to know “for sure” if there was something I should probably avoid.  Low and behold, the tests showed I was still allergic to food!  Here’s a picture of the skin test for food allergens (it looks worse than it felt; the big welt in the middle is pistachio) and the written diagnosis (why are these so hard to decipher?)  I had mild itchiness that night, but was fine the next day.

A few weeks later I went back for testing on “inhalants” — which worried me a bit.  What was I going to inhale? Would this mean I might have an asthma attack?  Well, I shouldn’t have worried…it was for environmental allergies like grasses, mold and animal dander e.g., allergens that one inhales.  And to only the surprise of the nurses, I was off the charts allergic to lots of things!  Here’s my skin prick test (again, it looks worse than it felt; the red column is grasses) and the written results.   I had to go to a separate lab on a different day for a blood RAST testing. [This test isn't so painful to look at.]

I was given a prescription for 4 Epi-pens, a refill on my inhaler and Allegra to take daily for environmental allergies.   Got a serious lecture about having the most dangerous kind of allergy — one that affects my breathing by swelling in my throat and mouth.   I also got a bill for $1500 that luckily I could pay with my Health Savings Account and didn’t have any true out-of-pocket expense.

Doctor B: HMO Insurance

Number of Doctor + Lab Visits: 1
Tests (1):  Two Arm Skin Prick: Select Food + Inhalant/Environmental
Cost: $10

I called the Allergy Dept directly to make an appointment and was pleasantly surprised to get an appointment with the head of the allergy department.   I shared my history and recent reactions and they had a different approach — to do the least amount of testing as possible.  This could have been because of my age and knowledge, or just practice to reduce the amount of (expensive) testing.  My doctor didn’t recommend RAST testing off the top, he wanted to see the results of the skin test first.

Rather than test on my back, they tested on my forearms [picture of right arm - food allergens].  Each arm had different panel, and was specific to those things that I had mentioned I had a reaction before.  While it is less pricks and one less visit, it was more uncomfortable than the two back tests.  I think it is because I can see it, and therefore want to scratch it!  It was easier to ignore when it was on my back.

The doctor and nurse reviewed the reactions and then I got a summary to take home — which was not very helpful for interpreting on its own.

I was given a prescription for Epi-Pens, and I asked for more so that I would have extras at work and in the car (as Doctor A had suggested).

My conclusions about my own allergies

• Based on the RAST and skin tests, my sensitivity to almonds was nil to none.  The same as peanuts — which I have no problem with.  This was a shocker and explained why I am able to eat Honey Nut Cheerios and never knew it had almonds. (!)  I decided to test it out with an oral challenge.  Since I am well versed in what a reaction starts to feel like almost instantaneously and the skin test was negative, Doctor A recommended I get some raw almonds and park my car outside the ER.  Then take a lick, a nibble, a small bite and gradual eat one.  Then wait.  Then two.  Then three.  If no reaction, then I probably won’t have a problem.  I did this one afternoon and had no reaction at all.   I decided to “up the dosage” — each day that week I’d eat a handful of raw almonds, gradually getting up to a large handful.  I never had a reaction, but by day 5 I started getting this heaviness in my stomach, not really nausea or a cramp or upset.  But certainly discomfort and later had some GI “issues.”  So I just in case it was possible to sensitize myself to an almond allergy if I keep eating them, I decided to keep avoiding them.
• I should stay FAR away from hazelnuts, pistachios and cashews.  Seeing how bad my skin test were helped me prioritize my chef card that I use at give to servers when I eat out.   While I don’t want to eat my other allergens, these specific tree nuts are the most dangerous for me.  This helps me be more clear and therefore safe.
• I have not “grown out” of anything, as I’m still highly sensitive to all the same things I was allergic to as a child.  However, my reactions are greatly reduced as I don’t require daily allergy medicine to control reactions.  I attribute this to 10+ years of allergy shots — one in each arm– and being good at avoiding key trigger allergens (like animal dander).
• I do have a new sensitivity to raw green beans and snap peas, the doctor diagnosed this as OAS – Oral Allergy Syndrome.  This finally put a name on that tingly or itchy tongue that I get when I eat cantaloupe and unripe avocados.  Since the proteins change when they are cooked, eating cooked beans and peas is totally fine for me.

My conclusions about allergy management and knowledge

• Skin and RAST tests are not the final verdict on the severity of your allergy.   I showed sensitivity on the test to some allergens, but have never felt a reaction.   When you have a positive on either type of test, both doctors confirmed that the best judge of whether (or how much) one is allergic is to actually come into contact with the allergen.  That being said, they also recommended oral challenges to a known allergen be done only with doctor supervision.
• The amount of practical information I received from the doctors  about how to manage food allergies was really slim.  Only one mentioned FAAN and neither had a packet to give to newly diagnosed patients (I asked just in case my history made them assume I wouldn’t need it.)  I did get a firm lecture on how serious my allergy is…that I should never trust eating out, that buffets are hugely dangerous for cross-contamination (which I never really thought about), that I need to ALWAYS have my Epi-Pen and to not second-guess using it.
• I am grateful I have healthcare options.   It is unusual in America that I had the opportunity to talk to two doctors and have so many tests that each helped me understand a different aspect of my health.  It worries me that those without health insurance, or one that doesn’t cover the cost of an Epi Pen (didn’t mention that I did not use PPO to pay for those prescriptions — it would have cost $150 for a twin pack!) are not so lucky.  Not only may they not be able to afford life-saving emergency medicine, they may not have a full understanding of the dangers if they are allergic but haven’t been informed about them.
• As for PPO vs HMO insurance quality of allergy care — I think they both had their pros and cons.  While the private practice physician had more through use of testing, this was three separate trips over 2 weeks and I had to pay for them.  The HMO allergist would have called for more testing had I had a reason or need to request them (e.g., RAST, additional skin allergens).  In either case, the most proactive and assertive patient (or parent) one can be the better outcomes.  Have a question? Ask it directly.  Don’t understand their answer? Let them know.  Really do want a second opinion?  Push for it.  The doctor’s office is not a place to be reserved and error on the side of being polite.  Knowledge is power and how can you advocate for you or your child if you don’t know or understand as much as possible about your allergies.
• We still have a long way to go in terms of understanding allergies – both in terms of why one person has them and another doesn’t and whether we can find a cure (and not just treat it).

For me, I won’t be waiting another 20 years to visit the allergist again.  Now that I am well armed with knowledge about my own allergies, I can be a better advocate at resturants, work and social gatherings.  I realized (or maybe I have been remindeded again) that knowing is better than assuming…it gives me power to be more vocal and therefore safer.

My perspective on holidays is to use them as another opportunity to educate people about food allergies.  Yes, I get really nervous during any type of holiday celebration.  However, I embrace the time to reconnect with Matthew’s teacher and classmate families.

I am lucky that Matthew’s teacher is extremely supportive.  We talked through the best way to manage the classroom celebration and communicate to the parents of his classmates.  I honestly think that my energy in providing education about what he can eat has an impact to making these celebrations not such a daunting task.  We pull from this list and then for the special dessert, I provide it for the full class.  Yes, I’m baking more but I’ve reduced the exposure and make it easier for everyone.

Additionally, I’ll be providing a note that requests not to put candy in the cards for Matthew.  I thought about providing the parents a list of candy that is safe for Matthew but then thought against it.  In all honesty, do our kids need candy in our society where we have a child obesity problem?

Just maybe, we as allergy families can help make that shift to helping people really realize that we may have gone too far in the commercialism of unhealthy food.

It was also a special day for Generation Allergy.  We were a sponsor at the event, raised $1,200 and launch our new educational product line.

We are passionate about enhancing the life of children with food allergies.  As such, we created our new product line to help reduce the risk of an accidental allergic reaction.

We are really excited about these products including the My Allergies and Me video.  This video personalized with your child’s name, photos and specific food allergies allows you as a parent another way to educate that selected few that care for your child. Generation Allergy calls this special group your Circle of Trust.  These people are an extension of you and need to be adequately informed not just about the severity of allergies but more importantly your child’s specific allergies.  Check out a sample of the My Allergies and Me video.

Thank you to everyone that helped us at the event, donated money and a special thanks to those of you who stopped by our table and shared your stories.    Visit the Generation Allergy Facebook page to see more fun event pictures.

Thanks
Kelly and Heather

Hopefully, you won’t have to live through this but if you do maybe this information will help.  As weird as it may sound, I’m actually more confident after this incident knowing that both Matthew and I could get through this together safely.  We did it!

July, 2009 anaphylactic reaction

Summary of Incident:

• 9:00 Morning – Matthew had breakfast and was acting normal
• 11:30 Playdate – Matthew had 5 of his friends over for a playdate.  No outside food or drinks are allowed to come into the house.  Kelly served the kids a snack of Chex (Rice, Corn and Wheat) cereal and grapes.
• Matthew has had all three of these cereals in his diet previously.  Kelly removed these from his diet 10 months ago as a precaution when General Mills came out with a new flavor of Chex that contained peanut flour.  Kelly called General Mills to discuss cross contamination and ingredient labeling.  They confirmed that there is no need for concern with the Rice, Corn and Wheat cereal for cross contamination of dairy or peanuts.  Kelly also confirmed with allergy support group to see if anyone has ever had any issues.  Two parents stated that their allergy child eats these products and have had no issues.  Thus, Kelly added the Chex cereal back into Matthew’s diet.
• 1:00 Lunch – Matthew had lunch.  Kelly made Matthew a chicken wrap and more Chex cereal from the playdate.  All of the contents of the wrap Matthew had been previously eaten.
• Chicken wrap – wheat tortilla (existing package and previously eaten), avocado, tomato, chicken (cooked by Kelly and previously eaten), half a slide of Vegan soy cheese (existing package and previously eaten twice).
• 1:20 Matthew ate lunch showing no issues.  He asked to be excused and upon getting down immediately threw up.  Literally, one to two minutes later, Matthew attempted to throw up again but couldn’t and his entire face became bright red.  Kelly immediately provided Benadryl but Matthew couldn’t swallow.  Kelly instructed the nanny to get the EpiPen and call 911.  Kelly put her fingers in Matthew’s mouth to push down his tough and look at his throat.  Unable to see anything, Kelly administered the EpiPen Jr.   Matthew was thrashing around kicking his legs, hard to control and he was not talking.  Given the signs that Matthew couldn’t breathe, Kelly gave him the EipPen Jr.  After administering the EpiPen Jr., Kelly heard the sirens and told the nanny to go outside and wave the emergency team down.  About another 1-2 minutes past and Kelly took Matthew outside to meet the emergency team.  Outside Matthew threw up again.  This was an excellent sign that the EpiPen Jr. stopped the swelling and opened his throat for the flow of oxygen.  The emergency team arrived and Matthew was alert and crying.   The hives started to form on his chest.  The hives were white and looked like a mosquito bite.  The largest hive was the size of a quarter.
• 1:40 traveled to the hospital for additional observation.  In some cases, there is a secondary reaction anywhere from 2-5 hours later.  Matthew was given an IV for fluid, steroids, Benadryl and Ranitidine (generic for Zantac).  Matthew didn’t have any additional reactions.
• 8:30 Matthew was given a bath and Kelly noticed additional redness around his neck and shoulder area.  This may have been caused by placing the water on Matthew’s head to remove the previous throw up and it was reabsorbed.

What I learned:

1. Throat closed within 1-2 minutes from first symptom of throwing up. It is so fast you have to react quickly.  The EpiPen Jr. saved his life.
2. Entire face, ears and neck turned bright red
3. Couldn’t communicate with words but he arched his back and held his hand to his mouth.  We’ve taught Matthew that if this happens again to point to his bracelet and hold his hands to his throat.
4. Hives came after administered EpiPen Jr. which apparently is common with an anaphylactic reaction.
5. Matthew had previously eaten all of this food and none of the foods contained any allergens – dairy, eggs, beef, peanuts, tree nuts, seafood, green beans or seeds.  Each food item was from an existing opened package and Matthew didn’t have any previous reaction.  The only exception was opening the 3 new packages of the Chex cereal.  However, again Matthew has eaten this product before.

What caused the reaction?

After a food allergy scratch test at Matthew’s allergist, it was determined that the vegan cheese was what caused the reaction.  Specifically, the tara gum in the cheese.  The shock was he had previously eaten the vegan cheese with no issues.  This was just another reminder to me to be prepared at all times to handle an allergic reaction.  Matthew remembers this attack.  We continue to discuss this reaction with him as an education tool to help him understand how to ‘read’ his body and how to communicate to us that he is having a reaction so we can act quickly.

1 package lean ground turkey

2 packs of fresh lasagna style pasta

3 cups tomato sauce (ingredients below)

1 cup alternative cheese (Daiya – dairy and soy free)

2 medium size zucchini

1 can corn, drained

1 small can sliced black olives

Tomato sauce

• 3 cans stewed tomatoes
• 1 can tomato paste
• 1 tsp dried basil
• 1 tsp dried oregano
• Pinch ground cayenne pepper
• Salt and pepper to taste

Cook ground turkey until no longer pink and cut into bite size pieces.  Cook pasta according to package instructions.

While turkey and pasta are cooking, start cooking the sauce.  Combine all sauce ingredients together in a sauce pan and bring to a boil.  Reduce heat and simmer for 15-20 minutes.  Remove from heat and use a hand mixer to puree sauce.  Set aside.

Cut the zucchini into bit size pieces.  Drain the liquid from the corn and olives and set to the side.

In a glass pan begin to layer the ingredients.  Start off with adding a generous layer of sauce to the bottom.  This will help to reduce the ingredients to stick to the pan.  Then add a layer of pasta, turkey, alternative cheese, zucchini, corn and black olives. Continue this layering four times.  As a final touch add a sprinkle of alternative cheese.

Cover with foil and cook for 20 minutes at 350 degrees.  Remove from the oven and take off the foil.  Allow to cool and add fresh chopped basil to garnish.

Tip:

This recipe can be made ahead of time and cooked the following day.  Additionally, cooked pasta freezes well.